Poor, neglected RheumaBlog!

Cat-EmbarrassedI haven’t posted for a very long time, and I really do apologize. Now that the new year is well underway, no turning back, I’m going to do my best to post here a lot more often.

First, I have some really good news! I started Rituxan in November last year, after two, disappointing, 6-month-long trials each of Humira and Enbrel. Neither of those anti-TNF-alpha biologics had any effect on my rheumatoid disease. In fact, during that year my pain, fatigue, and frustration only increased.

But Rituxan! After about six weeks without any appreciable change, I started noticing that my hands and wrists, which have long been my worst RD and most frequent (read “constant”) symptoms for the last 10 years, weren’t hurting as much. At first, I barely believed it. After all, Sun-breaking-thru-storm-clouds-Evgeni-Dinevflares come and go, and with the holidays behind me, I thought (pessimistically, yes) that the change was likely due to less stress. In addition, we finally started getting some consistent, normal rainy weather here in drought-stricken California. Rain arrives with low barometric pressure, and I’ve noticed that I generally have less pain and other symptoms when the barometer falls and bottoms out. The cooler temperatures don’t bother me much. So, not really daring to hope, I put the positive change in my pain/disability levels off to those two circumstances: less stress, and weather.

As January progressed, however, I just kept feeling better. It was subtle–I’d be going through my day when suddenly, I’d notice that my hands weren’t tender and twingy. Nor were my feet, which had been increasingly cranky over the last year. I was sleeping better, not waking up multiple times during the night because of pain as often, and my sludgy, sore stiffness in the mornings didn’t last quite as long.

Cool, right?

And then I started noticing that I simply felt better overall. Again, it was subtle, like turning a light on with a rheostat, changing it in small increments from very dim to bright enough to see and read without issue. I had a little more energy. I saw my new rheumatologist (my beloved old one transferred to another state in September last year) in early January. I told her, cautiously, that I was feeling better. She was pleased, and said that my response was right in line with other patients for whom Rituxan proved effective–six weeks to two months after infusion, on average.

Rituxan is a chemotherapy drug originally developed to combat leukemia and lymphoma. The drug contains a live human antibody that targets and destroys B-cells that have the CD20 antigen on their surface. These can provoke an autoimmune response in some people. The drug generally continues killing B-cells for four to six months after the two Rituxan infusion-Nov2015infusions. The infusions, given two weeks apart, take about six hours each. Frankly, I prefer this method of delivery to self-injecting, even with an auto-pen. I’d gotten fairly used to doing it, but I was always uncomfortable and nervy, anticipating that heavy, stinging burn even when it didn’t come. I think that was really what I disliked the most about the injections: I couldn’t predict from week to week whether they’d hurt a tiny bit or a lot. And when the drugs did nothing in terms of relieving my symptoms, well…

I’m still taking my old, triple-therapy DMARDs, as welll: sulfasalazine, Plaquenil, and Arava. My rheumy has lowered the Plaquenil dose slightly, and says we’ll keep weaning off it slowly depending on how I do. I’d love it if I could take fewer RD drugs!

All this good news doesn’t mean I’m totally symptom-free. I still have occasional pain in my hands and feet, and my hip bursitis still raises its ugly head now and then. But these symptoms and comorbidities don’t stick around for long. Usually, they fade out within 24 hours or so. I think I can live with that.

A major reason I haven’t written much here on RheumaBlog is that I’m doing so much freelance writing elsewhere, both about RD and other health subjects. If you’re a real glutton for punishment, you can read about a year’s worth of my thoughts (written as Wren) about living with RD over at RheumatoidArthritis.net, an excellent, extremely dynamic website with a large and friendly patient community. (Another goal for this year: cross post these articles here, to RheumaBlog. I simply forget to do it. My bad.)

The other writers there include such brilliant bloggers as Carla, Mariah, and Andrew, and there are several others, as well. Their words and their writing are wonderful; each has a different take on the disease and offer positive ideas, encouragement, and education about living with it with hope, humor, and courage. I hope you’ll check them, and RheumatoidArthritis.net, out.

I’ve also attended several RD-and-health-blogger conferences and meet-ups over the last year or so, including Joint Decisions, HealteTalk, and most recently, RealtAlk RA.

Sponsored by a few of the big pharmaceutical companies, they’ve given me and many other bloggers and patient advocates wonderful opportunities to meet each other face-to-face, make new acquaintances and friends, and widen our scope of knowledge about the diseases we battle. The goal? To better pass on our experiences and understanding to others.

I can barely put into words how honored I’ve been to be invited to participate in these amazing get-togethers. Over the last year I’ve learned so much–including how to Tweet, which is another reason I haven’t been posting to RheumaBlog much lately. I twitter every day, talking to so many fascinating people from all over the U.S. and the world, all of whom have rheumatoid disease or other chronic or chronic pain conditions. My world has expanded exponentially because of my travels over the last year and a half! I’m humbled and so grateful.

As I mentioned in a couple of previous posts, I’ve been doodling, drawing, and painting again after a decades-long hiaitus. Here, too, I can hardly describe how much joy this has Proud Ibexgiven me–and continues to give me. I’ve been participating in several casual illustration challenges within the Twitter illustration community, including #Inktober, #illo-advent, #AnimalAlphabet, and #ColourCollective. Participating is voluntary, but I’ve really enjoyed doing so as often as I can manage. Drawing and painting on a regular basis has

brought my old talent back to life and started honing old skills even as I learn some new ones. My biggest challenge at the moment is to learn how to do digital illustrations using

Mouse-Wacom 1st
A small mouse, my first drawing with my new Intuos tablet & Painter software.

 

a tablet and drawing/painting software. It’s hard, but fascinating, and I’m determined to learn this new skill and get very, very good at it.

Finally, I’m still living with and caring for my mom, who I’m pleased to say has been feeling pretty good these last six months or so. We’ve settled nicely into our much smaller new home in the Sacramento suburbs, and we’re getting accustomed to living in this sprawling, busy, traffic-clogged place instead of the small, rural foothill community we were used to. There are good and bad things about both, but we’re focusing our attention on the good. For instance, shopping is so much easier now! Since that’s one of Mom’s favorite pastimes, that’s a Good Thing.

I’ll wrap this up now. Thanks for sticking with me in spite of my long blogging silence. I’ll be back soon!

 

 

 

 

 

 

The Soul Rain

I love rain …

DownpourBut sometimes the rain isn’t physical. It isn’t wet, or deliciously cool, and it doesn’t tickle my cheeks or make playfully wide, stompable puddles. It’s more like a dreary downpour that just won’t stop, one that won’t allow the clouds to break up or the sun to peek through. The puddles this rain forms are chin-deep. It’s a soaking, cold greyness of the mind that can affect anyone, at any time, for any reason, and those of us with rheumatoid disease are very familiar with it.

It’s the soul rain. It’s hopelessness.

Read the whole post at RheumatoidArthritis.net

Positive Redirection

I’m stepping into this a little bit late–like 16 days into November late–but I onlyRoughDay just learned of the #ChronicallyGrateful Challenge a few days ago. My Twitter friends Molly Shreiber(@mollyschreiber, http://www.atjax.wordpress.com and Alan Brewington (@abrewi3010, http://www.paintalks.com) have been tweeting and/or posting their answers to the challenge daily–and they’ve been totally wonderful. Do take a look.

So, here’s my answer to Day 16’s challenge: On a bad day, what is a way to redirect yourself to a more positive place?

Well, if you’ve been reading RheumaBlog or following me on Twitter for very long, cedar-waxwingyou already know my answer: I look for the Gifts. Which means, basically, being mindful–being present in this moment right now–and noticing the beauties, both small and large, that the world offers us for free each and every day and each and every moment.

Today my hands are stiff and achey–that deep, sick ache inside the joints that almost feels like both hands are nauseous. This pain won’t keep me from writing or painting, or from doing the things I need to do today. After so many years of coping with rheumatoid disease, I can keep on with my life in spite of this kind of naggy pain. But it does affect my overall mood. This kind of pain can make me feel subtly blue. It can sap my energy–my spoons–and make me listless and distracted. It can make me feel glum.

So here are some examples of the Gifts that can easily redirect me to a more “positive place:”

  1. Submerging my sore hands and wrists in a sink of warm/hot water. The sensation is instantly and profoundly soothing, and it makes warm water in sinkme sigh and smile. After a few minutes of slowly flexing my hands within that warmth, I feel better in my head, even if my hands still hurt. I know that I can revisit this small therapy–this Gift–anytime; it only takes five minutes or so. Knowing that is soothing, too.
  2. Taking a walk. It doesn’t have to be a long one. Even five or ten minutes is enough. This kind of walk isn’t really for exercise (though it can turn into that, sometimes, which is another Gift). Instead, this is a Watchful Walk. I walk slowly, breathing deep and looking–really looking–at the worldplaying squirrels around me. The Gifts emerge: a neighbor’s beautifully tended garden; two squirrels chasing each other and playing in the old Valley oak tree; a quick flight of six flashy, black-and-white magpies, cackling as they go.
  3. Doing something nice or helpful for someone else. For me, most often this is for my mother, who I live with and care for. She’s often cold–especially now that the crisp, cool air of autumn has finally arrived here in Northern California. Last night, she was curled up on the sofa with a light throw over her, her legs and arms all drawn in close to her body. She was obviously chilled and uncomfortable, so I got her one of the nice, thick, warm, doubled-fleece throws the neighbor kids made for us a fleece tied blanketcouple of Christmases back. Mom was delighted: cuddling into the throw conjured a happy memory–and she was instantly warmer at the same time. Doing this small thing for her took my mind off my painful hip last night and redirected my thoughts onto a pure positive. It was a win for both of us.

These are just a few of the Gifts I look for, sometimes on purpose (as with the hot water, or by taking a walk) and sometimes by habit (helping Mom warm up). Each of them is an act of positive redirection that puts my mind and heart in a better place. The Gifts are especially precious on bad days, but I treasure them–and cultivate them–every day.

You can too.

Wanna Help Me Out?

I’m excited!JointDecisions

I’m attending the Joint Decisions Empowerment Summit in early November. This year it’s being held in Sausalito, California alongside the American College of Rheumatology Conference taking place in San Francisco at the same time.

Sponsored by Creaky Joints and Janssen Biotech, the summit is an amazing gathering of the most inspiring, creative, caring, informed, and influential patient bloggers/advocates in the nation. I feel incredibly honored (and humbled) to be included among them. Each one of us, like you, lives every day of our lives with one or more (!!) autoimmune rheumatic diseases, including rheumatoid disease, lupus, psoriatic arthritis, and ankylosing spondylitis.

If you’d like to see a short video summing up what the Joint Decisions Summit is all about–and see clips of such influential bloggers as Rheumatoid Arthritis Guy, Britt Johnson (Hurt Blogger), Carla Kienast (Carla’s Corner), Mariah Leach (From This Point. Forward), and, well, me, all of whom attended the JD Empowerment Summit last year, click here.

This year, I’m also participating as a panel member in a Creaky Joints virtual web seminar–a webinar–during the summit on Saturday, Nov. 7 at 8 p.m. EST. The subject: “Real Talk: Breaking Down Barriers in Patient and Rheumatologist Communications.” If you’d like to be part of it–and it promises to be chock full of valuable information–please register here.

An open, honest give-and-take between doctor and patient is something I believe is absolutely vital to any sort of success in treating not only disease, but the whole

patient–the whole human being. After all, rheumatic diseases do affect our everything, from getting out of bed in the morning, to caring for kids, to working and playing, to our relationships both intimate and otherwise. And I believe communication is an area in which both patients and doctors need  a lot of help.

To that end, I’d like to pose some questions to all of you. Your answers will help us make the webinar both educational and–more importantly–useful and empowering to all of us.

So, without further ado (I love that word!), here are my questions:

  1. Your rheumatologist walks into the exam room and says, “how are you feeling?” Well, I don’t know about you, but “pretty good” or “fine, thanks,” pops out of my mouth automatically, even when I’m in pain. I’m so used to hiding how I really feel from others, it’s hard for me to be truthful even with my doctor. What might be a better way for the doctor to phrase that question? What could they say that would prompt you to share how you really feel?
  2. What’s your relationship with your rheumatologist like? What’s helped or hindered it?
  3. Does your rheumatologist include you in their decision-making process regarding treatment? When you make your own decisions/changes, such as stopping meds or changing/adding diet, exercise, or supplements, do you share them with your doctor? Why or why not?
  4. What physical and/or emotional barriers to your health and well-being do you face? How do you address them? What’s worked for you?

Your answers will be anonymous and enormously helpful. I can’t thank you enough for taking a few minutes to answer them in as much–or as little–detail as you choose.

I write RheumaBlog, articles and posts about RD for RheumatoidArthritis.net and other health websites, and I tweet about RD on Twitter because I want to connect with others who also have this difficult and frustrating disease. For many, many years I felt totally alone with it. Finally being able to meet and interact with others, even if only virtually, was and continues to be a balm to my soul and a light in my heart.

But more importantly, I write and tweet because I want to help others who may not have as much experience in coping with this disease as I do. I clearly remember being a rheumatoid disease newbie. I didn’t know anything about it or what to ask my doctor. I coped with dreadful, disabling pain even as I worked full time, did aarthritis_by_thevilbrain great job at being a parent to my daughter and a wife to my husband, took care of our home and all the chores associated with that, wrote and made art, and tried my best to be a social person, as well. It was tremendously hard, and I did it without having anyone who really understood the pain, fatigue, and fear the disease could cause to talk to.

But with the Internet and social media, that’s all changed. It doesn’t have to be that way anymore–we don’t have to spend our lives isolated inside this disease. Do, please, take a couple of minutes to think about and answer the questions I’ve asked above. Your answers may help someone else cope better with their RD and may give them hope and calm their fears. Consider taking part in the webinar on Nov. 7. And always, always feel free to reach out to me here on RheumaBlog, or on Twitter ( I’m @RheumaBlog_Wren), or via email: bluewren56@gmail.com.

I love talking to you.

Ticker Trouble

The big nurse with the soul patch, great sense of humor, and easy, friendly smile Hypertensionzoomed me and my wheelchair down the hall with purpose. Trotting alongside us was a tired-looking primary care intern. She was holding a compact machine with small, blinking lights; the wires sprouting from it connected to the chilly little conductive dots they’d stuck all over my bare chest a few minutes before …

Read more about my high blood pressure scare at RheumatoidArthritis.net.

Day 4, RA Blog Wk: 5 Things I Have Learned

ChangeWell, I’m three whole days late for RA Blog Week. Unfortunately, life has simply gotten in the way of writing anything that can’t be classified as actual “work.” I hate RABlogbadgethat, as I love to write. I particularly love to write posts and articles I hope will be helpful to others who have rheumatoid disease (arthritis), whether they’re RD veterans or newbies.

So, without further ado or procrastination, I’ll get started. Today is Day 4 of RA Blog Week. The prompt is: Five things I have learned – write about the five things you have learned about yourself, or RA. 

Oh, over the 28 years I’ve had this disease, I’ve learned. I’ve learned a lot.

First of the Five: I Never Dreamed I Was This Strong. Starting about six months before I was diagnosed, I experienced increasingly painful and disabling flares. They didn’t stick to one place. Instead one flare would be in the knuckles of one of my hands; the next in one of my knees, the next in a shoulder. All of themlasted from two to four days. Sometimes there was a stretch of time between them–a day, or a week–sometimes, there wasn’t. The intensity of each flare varied. They were completely unpredictable.

And yet I continued to manage all the duties and responsibilities of being a wife and mother, including the housework, the grocery shopping, playing with my daughter, and participating in family outings. I also worked full time at a job that frequently required me to be on my feet and moving. When I wasn’t doing that, I was at my MonsterRheumadesk, writing and typing the articles I’d just gathered the information for.

I did it all with–and in spite of–those awful RD flares. There were times, of course, when one would strike a joint that would prevent me from walking, typing, or moving, and I’d have to call in sick. I hated to do that, though, and to make up for it, I worked longer hours during days I was more able. I never once missed a deadline or let anyone down, and because of that, my boss and co-workers kindly excused my absences. At home, I still did most things, most of the time, but once in a while I needed help from my husband. I hated that, too, though, and I didn’t give myself permission for that very often.

I look back at that time and wonder how in the world I did it. Since then, my disease has changed, become somewhat milder though just as constant. I have, indeed, learned how strong I can be when I must–but I’ve also learned that there’s no shame in asking for help. This disease is serious. When you’re in pain, fighting severe fatigue, and feeling like bloody hell, you don’t have to be a hero, even if you can be one if you have to. Give yourself a break. Rest. You’ll feel better overall if you do. And the chances for burnout–depression–are less that way.

Second of the Five: I Never Dreamed I Was This Weak. The flares my rheumatoid disease sometimes causes can knock me down for the count, making it impossible for me to do much of anything but whimper and wait for them to end. arthritis_by_thevilbrainWhen this happens I feel incredibly weak and useless. If I were a Neanderthal, my tribe would abandon me to die, alone in the elements.

Good thing I’m not a Neanderthal. But I’d be lying if I sometimes didn’t feel like I ought to be abandoned to my fate. Like anyone else, I like being a useful, productive member of my family, my community, and my society. I feel uncomfortable when I can’t. I was raised to feel guilty if I sat around doing nothing, and even today, decades past childhood, that training remains ingrained in my very being.

I’ve learned, though, that resting and allowing the RD flare to follow its course has nothing to do with being lazy or weak, no matter how much my brain may tell me otherwise. Instead, resting helps my immune system calm itself down and, if I’m lucky, call off its erroneous inflammatory attack on my poor synovial joints and other soft tissues earlier than it might otherwise.

“Weakness” can refer to a physical state or a mental one. RD can affect our physical bodies tremendously, but in most cases, we’re strong enough to keep going anyway, even when it’s smarter not to. The mental side of weakness is, I believe, an artificial construct of our culture, which expects us to be strong–physically and mentally–no matter what. It rarely accepts excuses. But this is terribly harmful to all of us, whether we have RD or not. When we’re ill, we can’t heal or regain our physical strength without rest and recuperation. It’s silly and cruel expect otherwise.

I never dreamed I could be this weak–or, as I wrote above, that I could be this strong.

Third of the Five: Always, Always Look for the Gifts. One day, a year or so after diagnosis, I was outside walking our dog, Max. My left ankle was flared, so doing this was incredibly painful, and I was feeling particularly low about myself and the world that day. Behind our flat was in was a long expanse of shaggy lawn, bordered by an old, very thick and high hedge that was always filled with birds. It also harbored hedgehogs. I loved this area–and so did Max. While he was doing his business and my ankle throbbed with ugly, angry intensity, I looked down and fairy ring realnoticed a large, brown mushroom near my foot. There was another one five or six inches away from it. Suddenly, I remembered reading about “fairy rings” as a child, those strange and wonderful circles of mushrooms that bordered the places where fairies held their nightly celebrations, dancing and singing and making merry before the sun rose and they went back to that other, mystical dimension in which they lived most of the time. Could this be one of those magical rings? Well, of course not. That was just a silly fantasy for children.

Wasn’t it?

I looked harder. Yes, there was a third mushroom, and a fourth… and a fifth, sixth, and seventh. To my utter astonishment and delight, I’d discovered a fairy ring–the real, living growth of mushrooms that gave rise to the fantastical myth long ago. Gazing at it, I could imagine tiny fairies dancing within it, leaping and twirling in exuberant exhilaration, laughing and talking, each of them dressed in beautiful clothing made of leaves and flowers…

Max tugged at the leash, vanishing my daydream in an instant. But my mood had changed–perhaps, forever. This, I thought as I slowly limped back to the front of the building with him, and then, even more slowly up the three long flights of stairs100_1268 to the door of our flat, was a Gift. It was so ordinary and simple, but so extraordinarily beautiful, that it was Huge. From that day on I’ve looked for the Gifts life offers us every single day, even if it’s as simple as a flower growing in a crack in the parking lot asphalt. Why? They fill me with wonder and awe, or maybe they make me smile or laugh. The best thing is they make me forget–even if it’s just for a few minutes or even a few moments–my pain, my cares, and my worries. These Gifts are always there for us, free and clear, no matter where we live or what we do. We only have to open our eyes and see them.

Fourth of the Five: Yes, I Can Give Myself a Shot. A year ago, my rheumatologist and I agreed that the cocktail of disease-modifying anti-rheumatic drugs (DMARDs) I’d been taking for several years was no longer working to keep my RD under adequate control. He prescribed a biologic that had to be given as an injection once every two weeks–and I’d have to do it myself, at home.

Now, I’ve gotten used to needles over my years of living with this disease. There are frequent blood draws, and occasional injections into joints and other parts of my anatomy. I therefore thought I was tough. But when I thought about sticking myself with a hypodermic needle, all I could do was shrink and cringe. It was one thing

This is not me. But this is how the auto-injector works.
This is not me. But this is how the auto-injector works.

having a nurse or technician wield the sharp things, but quite another to do it myself, to myself.

Well, fortunately the drug my doctor prescribed comes in an auto-injector, a tube-shaped mechanism that drives the tiny needle into the skin and injects the medicine automatically. The best part? To do it, you just press a button–and you can’t see the injection at all, since it’s hidden within the tube that’s pressed against the injection site.

Sure, the first couple of jabs were kind of scary. But it didn’t take many more before I felt pretty comfortable with the whole process. Since that drug didn’t work, I’ve since changed to another one. It, too, requires self-injection, except now it’s once a week instead of twice a month. No problemo! I just do it now without thinking too hard about it.

Someday, I might have to inject myself with a bona-fide hypodermic syringe. While I’m not looking forward to that, and in fact, I’m hoping I never have to, I know I can do it if I must. Having RD has helped me learn a lot of things about myself–even that I can face the thought of jabbing myself with needles, especially if they’re going to make me feel better and slow the progression of the disease.

Fifth of the Five: I Can–and Should–Share What I’ve Learned. I’ve learned many more things about RD and about myself over the years. Much of what I’ve learned about the disease, I’ve learned because of the Internet, and most of it after 2005. It opened my eyes and my mind, and I’m so, so grateful for the education. Now I know why this disease does what it does. I know what’s going on in my body when my joints flare. I know that it can affect other soft tissues in my body, as well, including my tendons and ligaments, the bursae, and organs like my heart and vascular system. Knowledge, they say, is power. I believe that. I’ve become much, much stronger since I started studying the disease that’s dominated so much of my life since my early 30s.

I’m not going to go into the many things I’ve learned about myself since I was diagnosed. I’ve written about a myriad of them here in RheumaBlog, and you’re welcome to read about them if you wish. But the biggest realization has been that I have an obligation to pass on and share what I’ve learned to others. I remember so clearly how bewildered I was when I was given my diagnosis. I remember how fearful I felt when the flares were horrible, and how totally demoralized I’d get MorningGlorybecause my feet hurt so bad every single day, whether another joint flared or not. There wasn’t much information available to the layperson about the disease back then, so I struggled on in ignorance. What I would have given to know what I know today.

So I try to share it as best as I can, now. This last, fifth Thing I’ve Learned may just be the most important lesson of all.

I hope you’ll check out the many posts my fellow RD bloggers–more than 40 of them!– have written for the most excellent RA Blog Week, hosted by His Cheeriness, Rick Phillips. Most of them actually started on Day 1, and every one of them is so worth your time. You can never learn too much about rheumatoid disease–or yourself.

Wishing you the very best as your day goes on. Don’t forget to look for the gifts, OK?

Piping up again!

My sister, who lives in Santa Fe, NM, has been here for the last 10 days visiting Mom and I. We grabbed our aunt last week and the four of us headed for Monterey Monterey Bay Aquariumand Carmel-by-the-Sea again. We had a wonderful time visiting the Montery Bay Aquarium (fabulous, incredible place well worth visiting if you’ve never been there!) and eating some lovely meals out. But Mom woke up quite sick Friday morning, so we came on home. It turned out she had a urinary tract infection, a common ailment in the elderly. After a tough four days, and trying two different antibiotics, she’s finally on the mend. Seeing her today, all bright-eyed and bouncy, you’d never know she’d been sick enough to end up in an ambulance on her way to the local ER.

I’m a little bummed, now. I just took my sister back to the airport. I love it when we get together and wish we could do it more often. She’s such fun to have around! We spend most of our time laughing. :)

I sent her home with this:

Rocky is Jami's beloved, goofy, most amazing bull terrier in the world. He's getting up there in years (sort of like Stallone) but he's enjoying a second puppyhood at the moment. Go Rock! The drawing was done with watercolor pencils, colored pencils, and ink on watercolor paper.
Rocky is Jami’s beloved, goofy, most amazing bull terrier in the world. He’s getting up there in years (sort of like Stallone) but he’s enjoying a second puppyhood at the moment. Go Rock! The drawing was done with watercolor pencils, colored pencils, and ink on watercolor paper.

A couple of nights ago I tried my hand at scribble-interpretation for a Twitter group for illustrators. The talented illustrator who created #3yroldscribble has her 3-year-old son draw a scribble each week, which she then posts on Twitter. The challenge is to “see” something in the scribble, illustrate it, and post it back to Twitter, including the hashtag #3yroldscribble.

So, I went ahead an interpreted and art-ed my little heart out. I posted it on Twitter last night, the very first time I’ve posted something to an art group on social media. Fun! I’m looking forward to comments from the other illustrators, most (if not all) of whom are far more experienced than I.

Here it is:

Scribble Hippo. Watercolor pencil, colored pencil, and inck on Bristol paper.
Scribble Hippo. Watercolor pencil, colored pencil, and inck on Bristol paper.

My rheumatoid disease intruded frequently during our travels and didn’t let up much after we got home. It ached and throbbed in my hands and feet, but also showed up as sharp, intense, but brief pains in my right groin as I walked. That’s arthritis in the hip–oh, joy–a problem I haven’t had for a very long time. I ended up having to find a CVS where I could buy a cane (I’d left my old one at home, not expecting to need it). The new cane helped a lot.

Today, I’m still fighting my hands and feet. It gets old, doesn’t it. Tomorrow I’m finally seeing my new rheumatologist; I’m hoping to convince him to switch me to another biologic. At nearly five months, Enbrel still isn’t working and my RD is steadily worsening. With luck, my new doc will agree. If not, I guess I’ll have to finish the full six-month trial. Sigh.

New Art ChairBut hey, it’s all good. Today the new drafting chair I ordered arrived. I’ll delighted with it. Unfortunately, the first chair I bought for my drawing table wasn’t quite tall enough, forcing me to put a pillow under my backside, hoping to sit up a little higher. It didn’t work very well, and I finally had to admit defeat. So–a new chair. It’s perfect!

Here’s wishing everyone a fun and relaxing Labor Day weekend. I’m ready for some autumn weather and colors, aren’t you? Thanks for reading!

 

No time for naps

Until recently, I wasn’t much of a napper. There was always too much life to live napping kittenand too much to do. I didn’t want to waste any time sleeping during the day, even when my rheumatoid disease gave me a lot of pain.

I lived for my first 14 years with RD blaming my near constant, bone-deep fatigue on being in pain, on being busy, and on poor sleep. Fourteen years of feeling guilty if I took a nap. Imagine my surprise when I learned, after having RD for roughly 20 years, that one of its major symptoms is fatigue. That it hits no matter how well you’ve slept, and regardless of your pain level…

Read more at RheumatoidArthritis.net.